In Their Own Words – 10 Ways to Help Your Child with Autism

This “In Their Own Words” essay is written by Lydia Wayman. Lydia is a 22 year old who “resides somewhere on the autism spectrum.” Her three favorite things are her service cat, Elsie, her best friend and her mom. She recently wrote and published a book, “Interview with Autism,” for parents and caregivers about life on the autism spectrum. Lydia previously submitted a fabulous post called “Ten Things That I Wish You Would Accept, No Questions Asked.”

Between my blog and the parents’ message board I enjoy visiting, I get a fair amount of questions from parents. Should I let her line up her toys? Would going to his dad’s on weekends be too upsetting to his routines? What can I do to help her get through an EEG?

I always do my best to answer them based on what I would have needed or wished my mom would have done for me, keeping in mind how it will affect the child as he grows up. As I get more questions, and they start to repeat themselves, I’m seeing patterns. I thought I would write something for parents to answer some of those repeated questions, and if they still had more, they can always contact me.

These are in no particular order (meaning, as they pop into my mind), though I will number them 10 to 1. I will use the pronoun “he” for the sake of simplicity and statistics.

10. On a day when he is particularly hard to handle, make a list of the things you love about your child. Share it with someone (spouse, coworker, sibling, pastor, friend; if you’re still stuck, heck, I’ll listen). But how does this help the child? It reminds you of why you love him so much, reorients your attitude, reminds you of why you do so much for this little person. Your improved attitude will have a positive effect on your child. I promise, we can tell when you’re upset with us.

9. Allow your child a chunk of time to engage in or talk about his very favorite thing with you, completely unbridled. People with autism spend so much time either self-redirecting or being redirected, that it often feels like we never get to really dig into what we love without the accompanying being cut off or redirected. Personally, every time I talk about cats, it’s overshadowed by the nagging thought that Leigh or mom or sister doesn’t really want to hear about them. They certainly never ask about Elsie. So for a bit of time, just let him be obsessed. Obsess with him. Pretend that what you’re hearing is the most fascinating thing you’ve heard all week. This subject is where he shines, whether it be bus schedules, the early years of the Beatles, or Thomas the Tank Engine.

8. Label emotions for your child early and often. Last night, an unimportant but abrupt change in plans left me frazzled. First things first; I picked up my kitty. Then I said, “Mom. I’m upset.” No response. “Mom, did you hear me? I’m upset.” The words felt unsettling. “Mom, I’m telling you something. I’M UPSET!” It struck both my mother and I that this was the first time in … ever, maybe? … that I’d come to her and labeled an emotion without prompting and without just acting out. This should not have taken 22 and 7/12 years to happen. Don’t let this be the case for your child. Ask your child frequently, “How do you feel?” You may need to offer suggestions or options at first, but never stop asking.

7. Model, model, model. Rinse and repeat. Model language, dealing with emotions, and facial expressions. Over-exaggerate and explain, step-by-step, what you’re doing and why you’re doing. “Do you see that my eyebrows are pointing inward and how my mouth is puckered? My face is telling you that I’m angry.” “Hey, let’s get your new school shoes when we go to the mall to get so-and-so’s birthday present. People say that we’ll ‘kill two birds with one stone.’ That’s a silly way of saying we’ll get two things done with one action.” “Oops; I expected the ice cream shop to be open. It’s probably closed early because it’s a weeknight. I feel very disappointed about that because I was expecting ice cream from this shop. But we can either go get ice cream somewhere else, or we can wait until tomorrow. Which would you prefer?”

6, Limit choices. If your child takes an hour to get dressed in the morning because nothing feels right, step 1 is to reassess his wardrobe and make sure that he owns only clothing that feels comfortable. Style comes second. That makes step 2 possible, which is to say “You can wear jeans or sweatpants today. Which would you like?” Do not allow him to pick any outfit from amongst 10. When you go to the store to spend his birthday money, rather than allowing him free reign of the toy section, say, “Would you like a game or some Legos? It’s your choice.” Obviously pick 2 things you know he likes, but do not allow him to choose Option C. Children, especially those of the autistic variety, become very easily overwhelmed with too many choices. For a young child, 2 is plenty. Expand the number of choices at your own discretion, but even as an adult, your child may struggle with this and need you to artificially limit his options.

5. Be flexible. If your child prefers to sleep on the floor rather than in his bed, simply move the mattress to the floor. If he complains that his pajamas hurt, let him sleep in his underwear. If he wants to watch pre-school directed television when he’s 18 years old, who’s he hurting? Realize that children with autism, by the nature of their developmental disability, show very scattered skills and abilities. He may be able to drive like a 16 year old, follow stories like a six year old, read like a 10 year old, and express emotions like a pre-schooler. Don’t look at your child as the age he is, but rather as the age at which he functions in each specific area. Cater to these as best you can, because your child cannot help it.

4. Use play to engage. If your daughter likes dolls, a dollhouse is the perfect toy with which to practice language, emotions, and interaction. If your son likes cars and trains, Thomas the Tank Engine characters have faces and speak and can be used to act. Many children like plastic animal figurines, which can be used in the same way. Encourage this type of play with an adult, older sibling, therapist, peers … all of the above.

3. Communication options. Regardless of how verbal your child may seem, teach him at least one alternative method of communication (PECS, sign language, typing, text-to-speech, etc). I was very verbal at a young age (2, 3), but the topics on which I can be verbal have always been limited. As I’ve grown older, I’ve learned to take fragments of things I’ve either said in the past or have heard others say and piece them together so that it sounds like intelligible speech. It’s really complex delayed echolalia. Very little of what I say out loud is both my own and novel. In order to produce new ideas, I need to write. In order to process, I need to write. In fact, and this may not make sense, I often do not process what I say. I can piece the fragments together and form a response based on what I know I should say, but most often, it would be impossible for me to repeat what I’ve just said to you, because I never processed it. Part of my brain gets left out. Even if it appears that your child is keeping up verbally, if he is on the autism spectrum, there is a good chance that a second means of communication would serve him well.

2. Don’t be scared of different. If I want to use a TTS in public and I’m not afraid of “what people will think,” you had better not be either. If your child wants to wear clothing that he finds comfortable and you find unattractive, and you’ve explained that “people typically do not wear clothing like that. They may look at you and think you are strange” and your child has no problem with that, then let him be. If he wants to text and wear headphones during church because it’s the only way he can possibly stand to be in that crowded room right then, and you’re afraid people will think he’s rude, then I question why you’re trying to impress people at church. If you know your child can only process auditory information when his hands are doing something (for me, it’s Spider Solitaire on the computer), but it looks like he isn’t listening, I ask you: Would you rather have him hear you, or look like he hears you?

1. Be consistent. If you’re upset, stressed, scared, overwhelmed, and yes even exuberant, keep your expressions of intense emotion to a minimum. They will confuse your child. Children with autism need their parents to be the same, above all else. It’s okay to practice labeling and expressing emotions, but only insofar as your child can understand them and can do the same for his own emotions. I am grateful for almost nothing more than the fact that my mom has always been rock steady in every way. You can use a lot of words to describe people on the autism spectrum, but “forward thinking” isn’t usually one of them… we live in the here and now, and if here and now is confusing or not right, then our worlds crumble. We can’t see beyond the right now to the what will be. We like routine because it’s consistent. Bedtime needs to have the same routine, day in and day out, as does wake-up time, meal time, and time to go to the grocery store. It may be boring to you, but it will make for a much happier child. If something different is going to happen, please let us know what to expect and remind us several times. Check for understanding.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Thank you for this excellent list. You express yourself fabulously in writing: you are lucid, coherent and convincing. I think we apply many of these principles at home, but I’ll definitely be more aware now. Just one question – what is a service cat and how is it different from a regular cat? (I love cats too)

So true and so enlightening. Days when eveything seem so ” normal”, its easy to forget exactly how things must be done and so easy to fall back on the oh so important steps that must be done. Thank nyou for sharing!!

Thank-you for taking the time to write this. My son will be 3 this weekend and we have had his diagnosis since December 09. We work very hard to understand him and where he is coming from so he can have a happy and healthy life. It’s insight like this that help to make this possible. By sharing you are helping us as parents to make the lives of our children better and happier. Thank-you for caring enough to want to change all of our lives for the better.

I need to remember to give my son 5-10 mins of uninterrupted time to talk about his passion everyday (nickelodeon and graphic design). Its so hard to just sit and listen and be engaged in his world when I have no clue what he’s talking about,..but maybe if I listened more often i would. We have a church that watches him one night a month,..and he always comes home SO elated because his “helper” has literally let him talk about whatever he wants non-stop for 3 hrs. I need to remember that look of satisfaction on his face when he gets in the car,..

Thank you for sharing your insight! My son is almost 4 and I know he understands so much more than he is able to communicate to me. Your beautifully written thoughts are very helpful to me in keeping perspective and better supporting my son. Thanks!

Thank you so much for writing all this wonderful info!!! My son is 3 1/2 years old. He is a beautiful boy with so much going on for him. He was recently diagnosed this past February as moderate autistic. I am a military wife so I stay at home with him and his one year old sister. Everyday is different and challenging for all of us. When I read your essay, it made me feel better to know how to understand my son better. Thank you again!

You have no idea how wonderful your list is. Although as a parent, I know I must do all of these things to help my 3-year-old cope, in the heat of battle, I sometimes forget. For example, if I discover that she is about to do something dangerous, I find it nearly impossible not to scream–she is my baby. So what I am going to do is copy the main points from your list onto pieces of neon tag board and post them around the house. They will make great, colorful reminders! Thanks!

This is an amazing article. It has brought me to tears twice because it is like looking through a window at my own life as a parent. I printed it for my husband and I am posting a copy on my workspace as well. Thank you so much for this and God bless you for what you are doing to help families dealing with this disorder.

Lydia, you’re fantastic! I’ve always felt that those things you talked about were going through my sons’ head and after reading your piece, I feel even closer to him. Thank You ever so much, you’re great!!

Im 21 years old and as I read on I couldn’t help but feeling a little sad… I have a 6 year old brother who means the world to me we always thought of anthony as an amazing gifted child he loves to draw and he most draw every single day :) ..when he was diagnosed with autism we didn’t believe it because he seemed like any other child to us (and bc we had never heard of autism spectrum before) but as time went by we noticed that he was living in a pattern and over reacted to things that made no sense to us and sadly we just thought he was a spolied child that wanted everything handed to him… its not easy I still stuggle to believe that there’s something wrong with him as sometimes society puts it …but I thank you from the bottom of my heart for your list your wonderful list…its like a window into how he feels and how we can help …there’s so many ppl around anthony that care for him but who didn’t know how to help…but now we can understand so much more again thank you so very much .. One last thing, I wouldn’t change the way anthony is for anything in the world otherwise he wouldn’t be the unique and amazing artist that he is …he’s my world . :)) -cAnDy

Lydia, thank you so much for your insight. It has opened my mind and eyes to what is going on with my grandson who is 3 years old and lives with us. He is such a sweet boy, but at times is very difficult. Now I know to let him be not only as an autistic child, but also as an individual. He is our little man and he is so special to us. I will definitely share this with his mother and the rest of the family. Once again, thank you for opening up his world to us. God bless you for who you are and what you are doing for everyone you reach with your articles. Keep up the GREAT!!!!! job.

Lydia, your list was wonderful! It should be given out as a pamphlet to all parents who have a child newly-diagnosed. My 6-year old only talks so much as to tell us what he wants or answer a simple & direct question. I PROMISE you that when he is old enough to be obsessed with something and wants to talk to me about it that I will listen until the sun comes up. Oh and by the way, I love cats too!

Go Lydia! YES!! Keep telling this truth because everyone ELSE (as in those NOT understanding of life on the spectrum) needs to hear it – I remain ever certain that with enough knowledge comes understanding, and once there, every being who is gifted with autism can truly let their light shine.
YAY Lydia!

Thank you for the excellent suggestions. Sometimes, we parents overlook the many gifts our children possess, which enrich our lives daily. We may also forget to give credit to our sons and daughters for the brave efforts they make every single day to thrive with their ASD.